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Category: Appreciation

Most of us have had to suffer through a holiday admission at one point. It’s a reality of our disease, which, for most of us, never made a habit of consulting our social calendars before burdening us with an exacerbation. I’ve spent several Christmases, birthdays, wedding anniversaries and many-a-Thanksgiving admitted. As far back as middle school, most of my holidays were spent in the hospital simply because it was an advantageous time for an admission.

It’s not an easy thing to endure for kids or adults. On a good day, being in the hospital is boring, uncomfortable and tedious. The holidays magnify our misery by adding self-pity and a serious case of F.O.M.O. to the litany of grievances. However, there are a few easy things you can do to weather the emotional storm of a holiday admission:

Make a To Do List. While a day of nothing but channel-changing can seem never ending, a daily to-do list can help compartmentalize your day and alleviate the monotony of an admission. Reading, exercising, playing games or journaling at specific times can be helpful distractions and keep you from staring wistfully out of your window.

Enjoy Holiday T.V. Ordinarily, I don’t watch a lot of television. But during the holidays there are so many classic movies, parades and specials on, allow yourself to indulge in the holiday deluge. If nothing else, it helps pass the time and connects you to the outside world (“Hey, did you catch It’s a Wonderful Life for the sixteenth time on NBC?” “I sure did!” “I don’t really understand why ‘Hee Haw!’ is funny.” “Me either, but Clarence is my favorite.”).

Schedule Holiday Events Post-Discharge. The holidays are the holidays because of family. The pilgrims will not cast a pox on your house if you host Thanksgiving the following weekend so ask family members if they are willing to attend a second family gathering after your discharge. This gives you something to look forward to and helps temper loneliness while your family memorializes turkey carving on Facebook Live.

Try a Little Empathy. No one wants to be in a hospital on Christmas, including doctors, nurses and nurse’s assistants. I know what you’re thinking – “they’re getting paid to be there.” And so as to preempt your next argument, yes, some are getting paid a higher wage for working on a holiday. But remember that many don’t have a choice in their work schedules, just as we don’t have a choice as to when we’re admitted. Staff are away from their families and missing holiday gatherings so they can take care of patients. Take a moment to tell a favorite nurse thank you for working on the holiday. Sometimes making someone else feel better makes you feel better too.

Order in a Special Meal. Diet restrictions permitting, indulge in a holiday craving (i.e., turkey with stuffing, Chinese takeout, multiple desserts). Your doctors will love that you’re packing in some extra calories and it’ll give you a break from repetitious hospital food.

Take Advantage of Tech. Twenty years ago, when we would emerge from an admission (shielding our eyes from the blazing sun, unaccustomed to human life), we had no idea what had occurred during our fourteen days of solitude. Gone are the days. With social media and constant connectivity, we rarely experience the same isolation we once did. Use today’s technology to cyber-attend family events from afar—FaceTime into family dinner or Skype into religious celebrations. Social media can sometimes (and ironically) exacerbate loneliness, but use its advantages to stay connected during the holidays. Feeling included can boost morale and help you power through an admission.

OWN IT: The Oscars, Viola Davis, and Celebrating What It Means to Live a Life

Well the Oscars certainly didn’t disappoint. I’ll get to Warren Beatty and Faye Dunaway in a second, but first I want to talk about Viola Davis’ acceptance speech.

For those of you keeping score at home Ms. Davis won the Oscar for Best Actress in a Supporting Role for her part in Fences. I haven’t seen the movie yet, but I certainly plan on it because, let’s be honest here, anything with Denzel Washington AND Viola Davis is sure to be awesome.

But, that’s neither here nor there.

In her acceptance speech, Ms. Davis (deservedly so) got very emotional and began what seemed to be a tremendous talk about some of the greatest stories being buried in the graveyard, and, while often overlooked, they are the ones worth telling.

It’s tough to dispute her statement. I love reading memoirs and watching biopics. What better way to honor someone and learn something new?

Ms. Davis then went on to say, “I became an artist, and thank god I did because we are the only profession that celebrates what it means to live a life.”

Everybody stop.

I think we’ve found ourselves an early front-runner for hot take of the year.

With all due respect, Ms. Davis, I disagree. Artists are not the only ones who “celebrate what it means to live a life.”

Asserting that artists are the only ones who do so is simply false. I’m not going to let your profession own this– everyone shares it.

Our lives are unique stories, and we are all the sole writers. Each story influences every other one out there, but ultimately they are our own. Some are told, and others are internalized for eternity. That doesn’t make one superior to the other, nor does it mean that some lives are celebrated while others are not.

The other week, I got some disappointing news at the doctor’s. I have to be honest, it caught me off guard and knocked me down. It also got me thinking about life, the punches it can throw, and how to get back up with strength, conviction and authenticity.Here are 6 tips for standing back up after being knocked down:

Today’s guest blog post was written by Emily and adapted from a speech delivered at the Global Genes and Penn Orphan Disease Center’s Rare Patient Advocacy Symposium.

Like so many of you, I’ve been thrust into this role of disruptor out of desperation.

I’m learning on the job every moment of everyday. It’s a 24/7 job. It is painstaking, relentless work; there are no breaks; and then there’s this fatal disease to manage on top of it.

It’s a crazy, dizzying reality.

And so while I’m certainly no expert, I’d like to share with you a few things I’ve picked up along the way.

#1: Stories are powerful.

You don’t realize the power of your story until you start telling it. It might be uncomfortable, but it’s a means to an end, and nothing touches people’s hearts like stories. It’s that thread of humanity that binds us together, and it’s pretty spectacular to see how much people connect and care.

#2: It’s all about relationships.

Everything that has happened for EE, every major development, every pivotal connection, every advance in research, it’s all been because of relationships. When the test tube says Emily and not some random digital code, it matters.

So go to the labs, talk to the scientists, SHOW UP. Make it painfully personal. There’s nothing in the world more motivating.

#3: Nobody can be a better or more tireless advocate than you.

I’m participating in a study where I’m be the first and only person in the world to try the therapy. The idea? It came from me and my mom. We have no scientific background, just a huge vested interest in the outcome, some creativity, and logic.

Of course we vetted it with tons of scientists and did all of our homework, but the original idea was all ours — ordinary, everyday Emily and Liza’s. Don’t underestimate your voice, your brain, your creativity, and your ideas.

#4: Be relentless.

When there’s a roadblock, find a creative way around and keep at it. Push and push and push and don’t accept no for an answer if you believe in what you’re fighting for.

#5: People really care, but you have to ask for them to step up and help.

If you don’t ask, the answer is always no. I’m naturally a very private person, a total introvert who hates asking for things. The only thing that has kept me sharing such personal details of my life and medical journey is the outpouring of love and support that results–and seeing how people rise.

After our inaugural event in NYC, I can’t tell you how many people came up to me and THANKED ME for the opportunity to get involved.

People want to be part of something bigger. They want to do good things. They want to make impact. It’s up to us to give them the opportunities. And it takes guts.

#6: You need a scientist champion and a respected Scientific Advisory Board.

When we first started making phone calls to labs and biotechs, people wouldn’t even answer the phone (or they promptly hung up!).

A scientist champion is your key into the scientific world and a respected Scientific Advisory Board is essential for vetting research projects and securing major gifts and grants. People need to know their money is going to reputable work.

#7: Build a nest of trusted advisors.

It truly takes a village.

We were thrust into this role of running a foundation. We still have no idea what we’re doing, we just know what we want and that we are willing to do whatever it takes to get there.

By building a nest of advisors, we draw on the expertise of so many different, brilliant people and pull them onboard.

We’ve had the privilege of meeting some of the most remarkable individuals. We call them our guardian angels and our progress is a testament to — and totally dependent on — them

#8: Don’t underestimate the value of YOUR creativity and ideas.

Sometimes the greatest innovation comes from outside of the biomedical institution.

Nobody has a bigger vested interest in your future. Desperation spurs creativity and innovation. You don’t need a PhD to have great ideas. Believe in them and tenaciously pursue them.

#9: Digital technology is your best friend.

Technology is democratizing; content is king. Use technology to spread your content far and wide. The world is at your fingertips and they’re eager to hear your story. Make it concise. Make it compelling. Make it easily sharable.

#10: Know what you want.

You need a clearly defined research goal to raise money and effectively mobilize a community. Do your homework, identify the leading researchers, labs, biotechs, pharma and all the key stakeholders, and bring them together. It’s essential to draw on their expertise to clearly articulate your research strategy.

People want to fund good work, but they need to know the targets. And so do you! Otherwise, your wheels will be spinning, and let’s be honest, we don’t have time or energy to waste.

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Emily’s Entourage is a work in progress. We are learning as we go. We constantly have to realign, refocus on our end goal, and troubleshoot — and it is HARD.

I think about EE every second of the day, with every breath I take. Literally.

What’s next? How do we grow? How do we make the research go faster? How do we add more revenue streams? How do we make the organization sustainable? How do I balance running EE and managing my health?

So many questions. So much to do. So little time — with a disease that rages on and robs me of my life, my energy, my breath.

I feel the crunch of time, the terror of disease progression, ALL the time. And that is the propeller.

At Emily’s Entourage, we pledge to keep at this, with this same vigor until there is a cure for EVERYONE with CF. And then, we pledge to take these lessons learned and apply them to another disease, to help another disease community get to the finish line. That is our greatest wish. That would be our dream come true.

In this podcast, we hear from Jerry’s CF medical team about his journey with CF and life post-transplant. They share how they work as a team to make patients with CF feel cared for and supported. For Jerry, because of the extensive amount of time he spends with them, his doctors and nurses at Columbia University Continue reading CF Podcast 159: Cystic Fibrosis Medical Support Team